PTEN Hamartoma Tumor Syndrome Resources
Support and Education Groups
Proteus Syndrome Foundation
http://www.proteus-syndrome.org/
The Proteus Syndrome Foundation supports and educates families and professionals, and fundraises for proteus syndrome research.
Websites
American Cancer Society
https://www.cancer.org/cancer/cancer-in-children.html
The American Cancer Society website offers helpful information about childhood cancer diagnosis, treatment, prognosis and resources.
American Cancer Society
https://www.cancer.org/cancer/cancer-in-children.html
The American Cancer Society website offers helpful information about childhood cancer diagnosis, treatment, prognosis and resources.
Coalition for Genetic Fairness
http://www.geneticfairness.org/
It addresses the growing concern surrounding the misuse of genetic information in health insurance and employment decisions.
GeneReviews™
http://www.ncbi.nlm.nih.gov/books/NBK1116/
GeneReviews are expert-authored, peer-reviewed disease descriptions focused on the diagnosis, management and genetic counseling for people with inherited conditions.
National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
The Genetic Information Nondiscrimination Act (GINA)
http://ghr.nlm.nih.gov/spotlight=thegeneticinformationnondiscriminationactgina
GINA is a federal law designed to protect people in the United States from genetic discrimination in health insurance and employment.